THERE’S a marvellous opportunity on Saturday to see an inspiring and eye-opening film made by a young aspiring academic struck down by chronic fatigue syndrome (CFS) sometimes called myalgic encephalomyelitis (ME).
I am so pleased to have been able to help bring this film to Newcastle because, for the many families who have a loved one suddenly incapacitated by an unknown illness, it will offer some solace and wisdom. I am pleased also to have the opportunity to summarise where the science is up to in understanding such illnesses.
Jennifer Brea is a Harvard PhD student soon to be engaged when she is struck down by a mysterious fever that leaves her bedridden. She becomes progressively more ill, eventually losing the ability even to sit in a wheelchair, but doctors tell her it’s “all in her head”. Unable to convey the seriousness and depth of her symptoms to her doctor, Jennifer begins a video diary on her iPhone that eventually becomes the feature documentary film Unrest.
Once Jennifer is diagnosed with ME/CFS, she and new husband Omar are left to grapple with how to live in the face of a lifelong illness. Refusing to accept the limitations of life in bed, Jennifer goes on an inspiring virtual global voyage where she finds a hidden community of millions who have disappeared from their own lives, confined to their homes by ME. These patients use the internet, Skype and Facebook to support each other.
Many ME patients have experienced uncertainty, confusion and even disbelief from the medical community and society as a whole. After all, it is easy to ignore a disease when patients are too sick to leave their homes. In Unrest, Jennifer shares her pain and the most intimate moments of her life in order to offer hope and visibility to those who suffer alone in dark, silent rooms. At its core, Unrest is a love story. Though Jennifer and Omar may have to accept that they will never live the life they dreamed of, together they find resilience, strength, and meaning in their community and each other.
Our research on CFS, rheumatoid arthritis, fibromyalgia, TMJ syndrome, dyslexia and autism some 20 years ago at the University of Newcastle has shown that, in each of these conditions, there is a disturbance of the amino acid profile in the urine that is indicative of a chronic catabolic state. Such a catabolic state is consistently seen in the muscle wasting we experience when we have an infection, traumatic physical injury or significant burns. More recent research from the US showed that CFS has the metabolic signature characteristic of a highly concerted response to environmental stress. Former colleagues in Melbourne have recently reported support for the chronic catabolic concept by their work on inflammatory markers.
CFS is a multisystem disease that causes long-term pain and disability. It is difficult to diagnose because of its diverse symptoms and the lack of a diagnostic laboratory test. It is very difficult to obtain funds in Australia for CFS research. Recently, the US announced $7million for research into this disease. Targeted areas cover the search for microbial agents, such as viruses and bacteria, which may play a role in the disease, and how genetics, the immune system, and metabolism interact in ME/CFS.
The public are invited to the seminar and film, Room CT202 of the Callaghan Campus of the University of Newcastle at 5pm on Saturday, November 11.